Monday, July 25, 2022

Sanfilippo syndrome

Most people think of dementia as an illness that only affects the elderly, but one family is sharing the heartbreaking story of their daughter, who suffers from a childhood version of the debilitating condition. 

In 2020, Haidyn Fowler was diagnosed with Sanfilippo syndrome, a genetic condition that causes the entire body to deteriorate, leading to seizures, movement disorders, immense pain and discomfort and, eventually, the loss of bodily functions. 

The condition is terminal, with a life expectancy between 10 and 20 years.

Haidyn was born with the illness and, although seemingly healthy at birth, her body has slowly started deteriorating — leaving her in near-constant pain and unable to speak at only 7 years old, and with the mental capacity of an 18-month-old. 

“The best way to describe [Sanfilippo syndrome] is that it’s referred to as childhood dementia or childhood Alzheimer’s because it attacks the brain almost identically to Alzheimer’s

disease,” Haidyn’s mom, Carrie,told Good Morning America. “But it is more than just dementia or Alzheimer’s, because not only does it attack the brain, it attacks the central nervous system, and it deteriorates the entire body. 

So anything that you think can go wrong within your body can happen with Sanfilippo syndrome,” she added, admitting that it’s difficult to look back at photos and videos of her daughter when she could still talk and walk unassisted. 

Haidyn has Sanfilippo Syndrome, a neurodegenerative disease that is like Alzheimer's in children. Right: She is shown with her mom Carrie.

Haidyn has Sanfilippo syndrome, a neurodegenerative disease that is like Alzheimer’s in children. Right: She is shown with her mom, Carrie.haidynshope/Instagram